Upper Bann MP Carla Lockhart Calls for Lifesaving Newborn Screening for Rare But Treatable Disease MLD
Upper Bann MP Carla Lockhart has made an emotional and urgent appeal in Parliament on behalf of a young constituent living with Metachromatic Leukodystrophy (MLD), a rare but devastating genetic disorder that is treatable only if diagnosed before symptoms appear.
In a powerful contribution during a debate, the DUP MP urged the Government to add MLD to the routine newborn heel prick test, highlighting the heartbreaking story of Teddy, a little boy from Upper Bann, whose diagnosis came too late because the condition is not currently screened at birth.
Speaking during the debate, Carla Lockhart MP said:
“Today I spoke on behalf of a little boy from Upper Bann who can’t speak for himself, who can’t walk, and who struggles to even smile.
Metachromatic Leukodystrophy (MLD), is one of the most cruel, degenerative diseases. It is rare, but treatable only if diagnosed before symptoms appear. Tragically, Teddy’s diagnosis came too late because there was, and still is, no newborn screening in place to detect MLD.
I urged the UK Government Health Minister to act to add MLD to the heel prick test every baby already receives. It’s a simple check that could mean the difference between life and unimaginable heartbreak. Early detection opens the door to life-saving treatment. Without it, families are left facing the unimaginable.
I want to thank the Minister for agreeing to meet with Teddy’s family in the coming weeks. I will also be writing to the UK National Screening Committee to make formal representations and push for this vital change.
No parent should have to watch their child fade away knowing that a simple heel prick could have stopped it. We are not asking for a miracle just a test.”
Carla Lockhart also paid tribute to Jemma Johnson, Teddy’s mum, for her courage and determination in bringing this issue to the national stage:
“Thank you to Jemma Johnson for being Teddy’s voice and a voice for so many children whose futures could be saved by this simple test. Her strength and commitment are both humbling and inspiring.”
The ArchAngel MLD Trust, along with other campaigners and medical professionals, continues to call for urgent action to include MLD in newborn screening programmes. Doing so would align the UK with other countries already taking proactive steps to prevent avoidable suffering.
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